Tag Archives: national registry

New Myotonic Family Registry Launching In February 2013

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Recently the MDF (Myotonic Dystrophy Foundation) announced the launching of a new patient registry. This registry looks very exciting and apparently will be some kind on interactive database. The database will help both patients and researchers. The patients will benefit by hopefully more easy access to clinical trials that will be starting soon. Researchers benefit by reducing the cost of finding and identifying patients with DM. Click here for the announcement from the MDF  Here is the new logo for the Registry

Make sure to sign up for this registry when it is available later this month

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Congential Myotonic Dystrophy Analysis of US National Registry

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Editors Note: This article is an analysis of the US registry. The US registry is a highly biased sample of patients with Myotonic Dystrophy. The registry has very few members with CMD and the questionnaires that are sent out do not deal with questions or issues with the Congenital form of DM. While the information here is somewhat useful many of the symptoms and issues of patients with CMD are not included.

The percentage of the population with DM in the USA registered is less than 5% leading to a highly biased sampling.

PMCID: PMC2952518

Congenital myotonic dystrophy in a national registry
Paediatr Child Health. 2010 October; 15(8): 514–518.

Patrick Prendergast, BSc,1 Sandra Magalhaes, BHSc MSc,1 and Craig Campbell, MD MSc2

Abstract

AIM:

To describe the neonatal symptoms, developmental problems and chronic multisystem medical morbidities of congenital myotonic dystrophy (CDM) patients registered in the United States National Registry of Myotonic Dystrophy – a disease-specific, self-report program maintained since 2002. Comparisons with the Canadian Paediatric Surveillance Program for CDM are highlighted.

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